Apologies if there are other similar posts, I’m new here and haven’t read through everything yet!
I was diagnosed with chronic fatigue in february after being ill since September. I have been hypothyroid for about 12 years and whilst I haven’t had many issues, my levels have been a wee bit all over the place for the last couple of years. However my thyroid has always swollen for periods of time and then returned to normal, and no one can tell me why.
When I had my “crash” last sept, my hr went really low, and I was shaky, weak and nauseated. After a week of rest, my hr came up a bit (still in the 40s on rest) but all other symptoms remained. I have suffered on and off from everything from tinnitus to joint pain, migraines, poor temp regulation and a bit of pots.
I’ll improve for a few days and then the symptoms will come back in force again. My thyroxine has been increased by 25much and my hr is now around 60 at rest. Levels show my meds are slightly high but not too much.
My query is as my headline... is it chronic fatigue or could it be complications of poorly managed hypo or even Hashimotos? I find it very coincidental that my thyroid has been a bit off for the last year or two, and now the cfs diagnosis. I have had days in the past where I have felt a bit shaky and weak but as it was never prolonged, I never thought much about it or pursued it. Now I’m wondering if it’s all related.
Sorry for the long post, thanks for reading!!
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Murphysmum
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I’d have to go back to the gp to get them first! As I’m reading through other posts now though, I am almost convinced I’m on the right track.... cfs/me diagnosis with no infections to kick it off just doesn’t seem right. And I’ve never found that my symptoms fit the post exertions malaise that cfs causes... mine is just random, but what to do about it?
Thank you. I’m going to call my gp to see if I can pick up a print out of all my blood tests so I can have a look. I’ve asked to be tested in recent months for vit levels too and have always been told “everything is fine” but I’m interested to see them for myself.
I find it too much of a coincidence that I have hypo and now cfs.... I’m not settling for that!
I searched for what I wanted and this is an excerpt:
Despite this evidence, Dr. Jacob Teitelbaum is currently advertising and reporting that patients can
recover from fibromyalgia and chronic fatigue syndrome merely with the use of nutritional and
herbal supplements.
To support his claim that this approach enables patients to recover, he refers to his recently published double-blind, placebo-controlled study in which most patients recovered. It’s important to note, however, as did Peter Warmingham,
that in the study, almost all of the patients used
thyroid hormone—a therapy that’s essential for most patients to recover from fibromyalgia and chronic fatigue syndrome. Teitelbaum’s study, then, didn’t show that patients with these diagnoses
recovered with the use of nutritional and herbal therapies; instead, it confirmed our published studies showing that patients can recover only when they use nutritional therapy and thyroid hormone.
I am sorry you have problems and hypothyroidism. If you can get a new blood test which should be at the earliest possible, fasting and allow a gap of 24 hours between last dose of thyroid hormones and the test and take afterwards. Get a print-out of your results, with the ranges and put up a fresh post for comments.
You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. If GP or lab wont do them, you can get a private test from one of our two labs and they are home pin-prick tests.
Ask GP to test B12, Vit D, iron, ferritin and folate.
If your FT4 and FT3 are lower in range instead of the upper part of the range it could be causing your clinical symptoms. I shall give a link and tick off the symptoms you have:-
However, it was only after about ten years after the introduction (I believe) of levothyroxine to replace NDT that 'new diseases' were named and they were CFS and Fibro. One doctor stated that these could be due to low T3 if on insufficient levo or we don't convert it very well to T3.
NDT contains all of the hormones a healthy gland would.
Personally does not sound like Chronic Fatigue Syndrome, but everyone is different. You can have chronic fatigue as a symptom of your thyroid issues. Chronic fatigue in itself is different from the syndrome. Best of luck to you!
Well, d’you know, I’m starting to doubt the cfs diagnosis too!
I had a very traumatic year last year (2 deaths in the close family, both sudden and unexpected, and dh had major health issues and added to this I have two young boys, one with adhd!) but at no point was I ill. My hr went scarily low (30bpm) and at rest normally was about 42-45bpm, and then I got all these other symptoms. But I’ve never had the flu like stuff or the swollen glands. To me, something is off. I’ve also kept a diary and I cannot get a pattern of exertion and malaise. Just general unexpelained malaise..... permanently! My Levo has recently been increased and that has helped a bit but I’m still way off the normal me. The diagnosis of cfs scares me as I need to be here for my kids but at the same time, it doesn’t fit.....
now my problem is finding someone to take my issues seriously and look at other options 🙁
Well most people have gotten sick at some point and do not get better with CFS. That’s the general case anyway. But everyone is different. I personally got mono but did not know it. They told me strep throat, so I did not rest like I was supposed to.
Does anyone know if stress and it’s effects on the adrenals would affect my thyroid and send it crazy? Could my thyroid state have changed permanently as of last year? Trying to get my head round all this!
Physical and emotional stress can have a very detrimental effect on your health ~ particularly when hypo. It certainly did for me! You will get lots of good advice on here, so don't worry ~ you could also put 'stress' or whatever, into the search bar and read related posts. 🌻🐝 x
I started taking mg at the start of the year and my levels are ok now. I’m just on a maintenance dose now. I will look into adrenal support more, ironically this is what I thought was the issue months ago but gp said my adrenal function was fine.
If anyone is in the position of being threatened with an ME CFS diagnosis then you need to find the energy to fight:
Ask for comprehensive tresting of anything and everything as even the poor NICE guidelines presume a 6 month period, AT LEAST, of exploration and referral to ensure that there is no other explanation for the symptoms.
Accept no counselling, antidepressants, anxiety or depression diagnosis for this epeisode and as far as possible ask for proof of the diagnosis with objective test procedures if the doctor seems determined. They are keen on somataform, Functional or Medically Unexplained Symptoms but resist resist resist. If you are labelled as such testing and believing you have physical issues will cease. Physical signs and symptom symptoms of unrelenting severe fatigue, poor sleep and cognitive difficulties can be signs of depression and many other things. Explain to them that depression means that the individual has very few plans if better tomorrow, but you have a veritable shopping list of things that you want to do, a sign that you are not depressed.
Explain that ME is a neurological disease recognised by WHO and that the only two diagnostic criteria worth applying are the Canadian Consensus Critieria me-pedia.org/wiki/Canadian_... or the International Consensus Critieria me-pedia.org/wiki/Internati.... If you do not meet these Critieria you will not accept the diagnosis as obviously there is another reason for your symptoms. Ireland has just taken the decision to issue all neurologists with the ICC diagnostic guidelines for ME so the times are certainly changing.
Take someone with you to help you feel supported in voicing your concerns and record your sessions on paper or by electronic means.
We have to fight hard to be listened to but making sure that you are not written off initially is important. MEpedia is a great resource as of course is this site. Most of us with the diagnosis and terrible health discover we have a whole host of uninvestigated and overlooked issues.
12 years a hypothyroid/Hashimoto suffer, but then lots of other illnesses including septic shock and need for insulin... then a year ago diagnosed with fibromyalgia ( rather akin to CFS), and still feeling awful. But I have done lots of research , largely thru the forum and Thyroid UK website, and believe fibromyalgia is very likely a sign of undertreated thyroid, and low associated vits/minerals... so I'm going down this route: earlier this year upped levothyroxin and supplements etc, now hoping to start T3 for first time this next week to add/replace a 137.5 levothyroxin dose. Find Dr Lowe's archived q&a section on Thyroid UK site and look thru index......interesting reading that might give you confidence in taking control of your own health!
I think you're first step is to get hold of the thyroid blood tests, and vitamin tests too if you can get them! Then you'll be able to find out if you're on the right dose.
Very often people who come to the forum in your position were just on the completely wrong dose, and may have been for years.
The fact that you got some improvement with a recent dose increase suggests you'd probably feel better again with another one.
Sounds like you had taken your tablets before ad recent test, so it will show up with higher amounts of hormone than you really have. If you're very under dosed we'll still we it, but you won't be able to fine tune.
If you want new tests now, you can go for a mail order finger prick test from Blue Horizon or Medichecks. Get a complete thyroid panel with TSH, freeT4 and freeT3. If money isn't tight, get the larger packages including vit D, vit B12, folate and ferritin as well.
Thinking about it, your GP is unlikely to have done freeT3, and may have only done TSH, as many GPs do, so you will need to get these pinprick tests to find out the full picture.
Thank you everyone. I find it hard to believe that my (what I believe is hashimotos) hypothyroid started after a period of extreme stress, and this episode has come out of similar, very stressful circumstances, yet cfs is the cause. The more I read, the more I believe something is wrong involving my adrenals, thyroid and hpa axis. I’m going to see my gp on wed and run all this past them, hopefully they will agree with me. If I have to pay privately to get to the bottom of it, I will.
As I sit here, a bout of dizziness has just started, ny head hurts and my limbs are getting tired just typing... the muscle weakness is increasing over recent weeks and it scares the hell out of me. I’d love to hear from anyone who has had similar cfs symptoms and has recovered, maybe after finding it was a wrong diagnosis. Helps give me confidence that I can improve, and that I’m not son a slippery slope to a bedridden life watching my boys grow up without me 😢
The first thing is to tune your thyroid replacement dose. You need to be on the right amount to feel well, and the simplest explanation is that you probably aren't.
You can have a new blood test and dose adjustment every 6 weeks, but on the NHS no one really gets that.
Got hold of your recent results on your GP visit, and if you can't get them go for Medichecks or Bluehorizon. There is no point looking at any other cause until you've seen if there is enough hormone in your blood.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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